Family ALS

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New member
Jun 29, 2022
Lost a loved one
Hi all,
I am first sorry that this disease has effected all of you as it has me. ALS runs in my family. I have had multiple family members pass away from it and my dad currently has ALS. I am only 23 but am experiencing some sort of symptoms it seems to me. My brother who is 2 years older than me has also expressed similar symptoms to me. His have been going on a bit longer than mine to the point it gives me a sort of comfort that it may be something else. My first symptom which I hear is not really a symptom but looking back on it seemed to be the start of this. I woke up one morning and had an extremely painful feeling in my neck to where I couldn’t move very well at all. I was then in pain for about 2-3 weeks as it lessened and eventually went away. It then came back 2-3 months later and I noticed muscle loss in my right trap/shoulder blade area. I went to chiropractors and a few other things recently that did not help. I now just feel tightness in my thumb and throughout the right side of my body. Just sort of started feeling tightness in my calf’s. My right side used to be stronger but is now weaker as well. The muscle loss plus the right thumb stiffness are what worries me. I know I’m just dumping this on here in a frenzy lol but as I’m sure you guys can imagine it worries me having run in my family. My dad assures me I’m too young but I still question it. So my main symptoms are muscle tightness in my shoulder/back along with muscle loss and weakness. Also tightness/stiffness in my thumb. Can anyone speak to this? Thank you
It is extremely common for family member FALS or notto develop concerning symptoms. It is highly unlikely that you and your brother would develop ALS at the same time as your dad.

you should go see a doctor of course. You are right that your symptom did not sound like onset. Your dad needs support so please get checked and cleared so you can be fully present for him

what is the family mutation?
I scheduled an appointment with a physical therapist that I trust a lot. Unfortunately I have to wait a bit to see him. The mutation is the C9orf72. Thank you for the response
The chances of you having c9 orf72 ALS at 23 are practically nil. As in papers would be written The average onset age is late 50s. the researchers used to say never younger than 35 though there have been a few younger ( I think 25 is youngest)however your symptoms don’t sound like it and the chances of you and your brother becoming the youngest ever reported are really nil.

a PT is fine but it would tale a doctor for any definitive diagnosis. I do encourage you and theyour brother to get involved in genetic research. Currently the main carrier studies for ALS potential carriers are East Coast centric. However there is an ftd study with sites in California if you can’t travel. Data from any c9 study will help the future.
I have been trying to respond to you but it limits my replies without upgrading account. Yeah I figured it was unlikely but those symptoms that I mentioned previously plus some muscle twitching has/had me worried. How do you get involved in genetic research?
I sent you a link that will help you find studies you might be interested in
Since my original post I have began experiencing twitching. It pops up randomly in a few places but one spot pretty consistently. I am struggling to find a description of als twitches but I am very concerned. Once again I am only 23 but with family history and I have about 3 or more very common symptoms I’m quite worried. My main question is how persistent are the twitches? Mine in one spot is very consistent but only when I stop moving around pretty much
Twitching means nothing. The more you worry the more you will twitch. My advice stands go to a doctor. Once you are cleared as I am sure you will be then you can be fully present for your dad who needs support and help and not to have to worry about you. You are being so unfair to burden him with this
I hope you can get this sorted and let it go, as Nikki says, and be fully present for your dad. You won't get this time back, and I can't imagine how much worry and even possibly guilt he will feel with you pointing to all these non serious symptoms you are focusing on.
I know both of you are right and I am focusing on not bringing it up to him. However, I don’t think me having multiple symptoms (atrophy, muscle twitching, muscle weakness etc) with history of als in my family (6 people known) is what you guys are calling non serious issues
If you read posts in the Could It Be section, you will see lots and lots of young people like yourself, even some whose family is sadly affected by ALS, who are concerned about similar feelings, but do not have ALS. And Nikki has explained how your age comes into play.

Have you even seen a doctor who can comment, for example, on what you consider to be atrophy, and baseline your strength? That should be reassuring in a way we can't be here.

I completely agree with Laurie here - go see a doctor, see your father's diagnosing doctor if they will see you. Sort this out with a doctor that can examine you and interpret what is happening to you by exam rather than by a text explanation.
If you read this post that we ask all members who post here read, you will see that your symptoms are frightening to you, but are not the hallmark symptoms of ALS even if PALS may experience what you have happening.
It is like saying - my father has brain cancer, I have a headache, therefore I have brain cancer.
Truly, I am so sorry you are dealing with this disease in your family, but Nikki who is our resident expert on familial ALS has explained why you simply would not develop FALS at this age.

Please read this one again
We have told you what we know and think. There is zero point in continuing to try to convince us. YOU NEED TO SEE A DOCTOR. Only they can confirm or refute your perceived weakness and atrophy and do any needed tests. I am closing this thread. Please only post again with an answer after the doctors complete their evaluation or of course with questions relating only to your father
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